Author Topic: newly diagnosed 5 months ago  (Read 665 times)


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newly diagnosed 5 months ago
« on: October 18, 2019, 11:27:26 pm »
I was diagnosed 5 months ago with an acoustic neuroma. the neurosurgeon that I am seeing has suggest the watch and wait because the size of the tumor it is not very big probably the size of a pea. before I was diagnosed I would always get dizzy to the point where it would look like I was drunk. my tumor was found when the doctor was looking for something totally different. when I meet with the neurosurgeon he asked me how my symptoms where I told him that it is almost a daily battle with being dizzy and the fatigue and the one sided headaches. I was prescribed valium a very low dose but that does not seem to be helping any more I take it up to three times a day with no relief sometimes it is hard to get out of bed on my days off from work because of how I feel. what I would like to know is do these symptoms ever go away or will I always feel dizzy and off balance.   


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Re: newly diagnosed 5 months ago
« Reply #1 on: October 23, 2019, 11:12:32 am »
Comesatnight - Sorry to hear about your diagnosis and ongoing symptoms.  Just a few thoughts from another AN balance issue compatriot.  I consulted a few Drs. during my initial research.  Of course each extolled the benefits of their specialty, but gave me all the options.  It is nice to meet with various practices to see your comfort level with each.  It helps feeling that they are in your corner.  I decided on gamma knife.  Had the procedure in July.  My tumor had grown 2 mm in 5 months in one of the dimensions.  It was just under the point where they would want to do surgery instead.  So I am thankful I went in when I did.

I too had/have balance and dizziness issues.  I went to PT and was given vestibular exercises to do.  Went back after 3 weeks and was much improved (which I could tell).  The thing that works for me is to keep moving and doing the exercises.  I still have good days and bad days.  It seems to be worse the second day after not enough rest.  Stress also makes it worse.  As others on the board mentioned, walking is one of the best things you can do for balance.  Include head movements as you are able, walk with a buddy when you are unsteady.  Walking on uneven surfaces is a challenge when you are up for it.  I still am unable to walk in the dark.  I literally cannot tell which way is up.

Keep pushing for yourself, and let us know how you are doing!